I will try not to waffle on, I just could really do with a listening ear at the minute!
I don’t have a formal diagnosis- I’ve been told that something is going on with my auto-immune system but blood tests haven’t shown enough to give me an official diagnosis of anything. I was in hospital for a month with Myelitis (inflammation of the spinal cord) and for the last 4 months have been pretty unwell.
For those of you who don’t have an official diagnosis, how do you get others to understand how you feel? My partner was great when I was in hospital but now that this has been ‘dragging on’, he seems less understanding. He gets frustrated when I can’t do things. I sometimes push myself to try to do more so that he can see I’m trying, but I end up more exhausted. My family don’t live nearby and don’t seem to understand how I’m feeling as they keep asking about when I’m coming to visit. My limbs are really heavy and tired and somedays just getting out of bed and getting dressed is a struggle. It’s so unpredictable as occasionally i’ll have a better day and be able to go out for lunch. I struggle to plan things as I don’t know how i’ll feel.
Sorry to moan, I just feel really alone. When I can’t say “I have x (diagnosis) and this is what it means”, it’s so difficult to explain to people how I feel. I don’t even understand it myself. My rheumy is going to start me on steroids soon, I can only hope that they will help me to get some of my life back.
Thanks for listening x